CALL TO ACTION to improve Organ Donation and Transplantation across the EU

INTRODUCTION

Organ transplantation is vital for the treatment and quality of life of patients of all ages - including children - living witha wide variety of conditions, such as the ones affecting the liver, kidneys, heart, lungs, pancreas, small bowel and eyes. Inmany cases, organ transplantation is the only treatment option remaining - and a matter of survival. This is the case, forexample, in pulmonary arterial hypertension (PAH), a rare and life-threatening lung/heart condition.

While the EU is taking a number of positive steps to address this situation - by means of an Action Plan, funding ofprojects and a Directive on standards of quality and safety of human organs - large differences in practices and resultsexist across the EU. The demand for organs still exceeds the number of available organs in all EU Member States. More-over, the demand for organs is increasing faster than organ donation rates.

The Pulmonary Hypertension Association Europe is taking the lead in a campaign to improve organ donation and trans-plantation across the EU, in cooperation with other patient associations, as this issue is crucial in a number of conditionsother than PAH, including many rare ones.

PHA Europe’s members, for their part, have committed to promoting this Call to Action and to advocating for betterawareness, availability, and access to organ transplantation on a wide scale and mapping the current state of play of thefield of heart/lung transplantation in their respective countries.

CALL TO ACTION

PHA Europe calls on the EU Member States:

• to work with and support national patient groups to raise awareness of the vital importance of organ donation and in-crease the availability of and access to organs;

• to support their national transplant programmes to ensure they reach their full potential for organ donation throughmore favourable consent systems, improved organisation, coordination, logistics, potential donor reach-out and edu-cation;

• to ensure that national transplant programmes take advantage of any technologies which can increase the number oforgans available (e.g. organ regeneration);

• to exchange good practices and learnings in order to improve awareness of the importance of organ donation, theurgent and growing need for organs, and increase availability of and access to organs;

• to establish and conclude agreements and cooperate with other countries if the national transplant programmes cannotcover all the domestic needs or if there are no transplant programmes in place.

PHA Europe calls on the European Commission:

• to continue with the implementation of its Action Plan and Directive and ensure extension of these activities beyondthe duration of the Action plan, while guaranteeing the participation and involvement of relevant patient organisa-tions;

• to continue to fund projects addressing awareness, availability, access, quality and safety;

• to continue with its implementation surveys to review the impact of the Directive on standards of quality and safetyof human organs, Action Plan and funded projects.

Wilhelmstraße 19 • 1120 Vienna • AUSTRIA • +43 1 4023725 • +43 1 4093528 • info@phaeurope.org • www.phaeurope.org

Endorsements at 5 October 2015:

EUROPEAN ORGANIZATIONS

NATIONAL ORGANIZATIONS

PHA Europe calls on the European Parliament:

• to closely monitor the Commission’s activities in the field of organ donation and transplantation and request informa-tion on the state of play on a regular basis;

• to support stakeholders - patient and health professional organisations - in their efforts to improve both access to trans-plantation as well as awareness of the importance and enefits to patients;

• to respond to the European Commission’s implementation surveys and other activities on the impact of the Directiveon standards of quality and safety of human organs, Action Plan and funded projects.

PHA Europe calls on other patient associations and health related stakeholders:

• to support and endorse this Call to Action;

• to join forces in advocating for better awareness, availability, and access to organ transplantation;

• to engage in collaborative work with national authorities, patient associations and health professionals and more widelyat European and international level, e.g. within the framework of EU-funded projects.

Vienna, June 1-2015

ESCWorking group on Pulmonary

Circulation & Right Ventricular Function

ERSEuropean Respiratory Society

ELFEuropean Lung Foundation

EURORDISEuropean Organization

for Rare Diseases

EPFEuropean Patients Forum

EPHAEuropean Public Health

Alliance

EFAEuropean Federation of

Allergy and Airways DiseasesPatients Associations

EKHAEuropean Kidney Health

Alliance

FENAERFederación Nacional de

Asociaciones de EnfermedadesRespiratorias

AELAMAsociación Española

de Linfangioleiomiomatosis

PULMÓN MADRID TXAsociación Madrileña

de Transplantados de Pulmón

ESC Sociedad Española

de Cardiología

SEPARSociedad Española de

Neumología y Cirugía Torácica

AOPCSocietat Catalana de Trasplantament

FEDERGFederation of European patient groups affected

by Renal Genetic diseases

EHNEuropean Heart Network

HUNGARYTüdŐér Egylet

IRELANDPHA Ireland

ISRAELPHA Israel

ITALYAssociazione Ipertensione Polmonare Italiana Onlus

ITALYAssociazione Malati di

Ipertensione Polmonare Onlus

PHA EUROPE MEMBERS

CZECH REPUBLICSdružení Pacientů s Plicní

Hypertenzí

CROATIAPlava krila - Udruga pacijenata oboljelih

od plućne hipertenzije

DENMARKPAH Patientforeningen

FINLANDSuomen PAH-potilasyhdistys

ry. PHA Finland

FRANCEHTAP France

GERMANYpulmonale hypertonie e.v.

AUSTRIASelbsthilfegruppe Lungenhochdruck

BELARUSAid to Patients with

Pulmonary Hypertension

BELGIUMHTAP Belgique, Asbl

BELGIUMHTAP Belgique, Asbl

BOSNIA AND HERZEGOVINAUdruženje građana oboljelih od

plućne hipertenzije “DAH” – u Bosni i Hercegovini

BULGARIAPulmonary Hypertension

Association

LITUANIAŽmonių Sergančių Plautine

Hipertenzija Asociacija

NETHERLANDSStichting PHA Nederland

NORWAYPHA Norway

POLANDPolskie Stowarzyszenie Osób z

Nadciśnieniem Płucnym i Ich Przyjaciół

PORTUGALAssociação Portuguesa

de Hipertensão Pulmonar

RUSSIANatasha Charity Fund

ROMANIAAssociation of Pulmonary

Hypertension Patients

SLOVAKIAZdruženie pacientov s pl·úcnou

hypertenziou, o.z.

SLOVENIADruštvo Za Pljučno

Hipertenzijo Slovenije

SPAINAsociación Nacional

de Hipertensión Pulmonar

SPAINFNHP Fundación Contra la Hipertensión Pulmonar

LATVIAPHA Latvia

GREECEHellenic PH

BULGARIAThe Bulgarian Society of Patients with Pulmonary Hypertension - BSPPH

REPUBLIC OF MACEDONIA

APH Moment

SWITZERLANDSchweizer PH-Verein

SWITZERLANDAssociation

HTAP Revivre

SWEDENNätverket för PAH

TURKEYPulmoner Hipertansiyon

Dernegi

UKRAINEPH URDA - Pulmonary Hypertension UkrainianRare Disease Association

UKRAINEUkraine Association

of Patients with PulmonaryHypertension

PHA USAPulmonary Hyperthension

Association

PHA EUROPEEuropean Pulmonary

Hyperthension Association

PHA JAPANPulmonary Hyperthension

Association of Japan

PHA LATIN AMERICASociedad Latina de

Hipertensión Pulmonar

PHA NEW ZEALANDNZPAH, New Zealand Pulmonary

Arterial Hyperthension Group

PHA VENEZUELAFUNDAVHIP, Fundación

Venezolana de HipertensiónPulmonar

PHA BRASILABRAF, Associação Brasileira

de Amigos e Familiares de Portadores de Hipertensão

Arterial Pulmonar

PHA ARGENTINAHIPUA, Hipertensión Pulmonar Argentina

PHA SAUDI ARABIASAPH Saudi Association forPulmonary Hyperthension

INTERNATIONAL PULMONARY HYPERTENSION ASSOCIATIONS